I am loving the 2 worded sentences and loving how he is understanding how to use them. Precious.

We are still on for surgery this Friday. We will have to leave around 4am for Gville. Eek! But we have to try to get things fixed. Camden is begging for food and I am constantly having to tell him no. Something is wrong with this picture! =0( Also, the choking is getting worse, again, so I am thinking this stretching is going to be the answer, but we will just go day by day and see. I dread him getting another major surgery, but getting stretched/intubated all the time isn't good either.

Also his testis will be brought down so please pray that he isnt hurting too bad afterward. =(

Tuesday, March 15, 2011

Saw Dr K and Dr J and long story short we are having surgery on April 1st. Camden will be getting another dialation on the nissen and will be getting the family jewels put where they need to be. =0) Dr K asked me if I had anymore ?s and I said, " Yeah, while he is intubated can ya fix the testies?" I am always trying to throw the little things in all his surgeries. He said sure ( what a man of many talents ) and I was grateful. I hate HATE my post trach baby being intubated. Especially since he just was intubated in Feb with the last dialation. And the fact that he had major airway and respitory issues doesnt help. Trying to focus on the fact that he is healthy and doesnt have breathing issues anymore. He is GOOD! Once you've had a vent/trach baby it can be so difficult to realize that their breathing is GOOD...as strange as that may sound. It doesn't get easier with these "easier" surgeries, even those this is nothing compared to what he's been through. BUT fear tried to creep in. I found myself crying off and on during the 1 hr 45 min drive home. I looked back in the rear view mirror to find Camden jamming out (with a ball cap on backwards) to the music. Still to this day, he is filled with JOY and oblivious to what is going to happen, and probably wondering why his mom is crying again. =0)God will, as always, carry us through.

Monday, March 14, 2011

He cant do real solids due to his nissen being too tight. We go to Gville tomorrow to talk with his specialist and GI so we'll know more then, but for now I have decided to stick with liquids and baby foods. I have to do something to get him in the right direction for eating orally! It seems there is always a setback. He doesn't have a problem getting liquids/soft food down, so 3 days ago I decided to stop feeding him through the tube during the days and just do night feeds. (he's been on night feeds anyways for lost day calories since his tummy cant handle much at once) I found a bottle that was really flimsy and soft. I need to use something where I can lay him back, put on a video and keep him distracted. He CAN suck a straw, but he is not going to keep sucking one for me. I thought about a sippy cup, but those are too bulky and he isnt going to go for that after a while and I knew it would take him some time to get a couple ounces down. So the bottle it is, and I even had to make the hole a little bigger.

It takes the kid forever to get hungry. I just didnt feed him and he played and acted like things were cool. So I finally laid him down and attempted to feed him. He fought me but I would just keep him distracted and kind of force him in a nice way. =p Long story short, in the last 2 days I have gotten 2 cans of formula down him which equals 16 ounces each day. This is GREAT. This is SOMETHING. Sometimes he'll do 2-3 ounces at a time. He always tries to quit at one ounce but I make him continue. Well tonight he did 5 ounces in one sitting, tried to stop twice and it took an hour, but he did it. That is what I give him for a feed, 5 ounces. So he did his whole feed orally!

I know Camden, and he'll get used to the eating idea and we can slowly switch to sippies etc. when his insides gets stretched again we will start doing more table foods again, which he prefers anyways. For now Im okay getting the calories down him this way. I never got to feed him at all so it is really okay for momma...

Bad thing is he cant have milk and soy makes his stools SUPER loose. GROSS. I usually make him a blenderized diet but forget him chugging that down so I have been giving him the formula to drink which means lots of loose stools.

Sunday, March 6, 2011

A little update on Camden's swallowing. The stretching has helped. He still has little spasms every now in then and sometimes hacks things up, but compared to what it was, it is much better. WE go to Gainesville twice this month, so we will discuss if further stretching is needed...

Went to Jax for ENT visit. Basically we were going for a follow up and to talk about closing trach. I have signed the pre op papers and we are ready to go BUT he doesnt want to close it up until we are sure Camden wont need surgery with these feeding issues. He doesnt want to do the trachea surgery and then they have to intubate him so, that sounds good to me. The hole isnt harming anything. =0)

Camden is into everything and just enjoying being "2" We bought undies and he did pee one morning, but I knew he had a full bladder so we caught it just in time. He is a little on the immature side, ( to be expected) so he doesnt have to do mommy's potty training boot camp like his siblings did. He gets to take his time. Im thinking he deserves that. ;o)

He is really into animals these days so while in Jacksonville we used our passes to stop in the zoo. He was beyond excited!! If you look closely in the pic above, you can see the gorilla he was looking at.

About Me

Camden James joined our family on January 22, 2009, weighing approx 8-9 pounds and measuring around 22 inches with an UNKNOWN congenital diaphragmatic hernia. He joins his father, Marcus and I and three brothers and a sister.He has a trach and has been off ventilator since winter of 09. He gets all nutrition from a gtube.Life is not what it was, but we are adjusting to our new normal and trusting God as He continues to guide.... *Camden had his first "reherniation" diaphragm repair on Oct 30 2009, patched with gortex.* Some colon had made its way in chest cavity, behind his heart.*He was hospitalized due to his first sickness resulting from a cold(we think) for the first time on Jan 6 2010, at almost one year old.*REASONS FOR BLOGGING? Obviously to keep close friends and family updated but more importantly to help others with special needs children. Other blogs encourage me, give tips, and help me realize that I am not alone on this journey.I hope to do the same for them.*Camden was decannulated on June 2, 2010!!!*UPDATE for 2011 He finally took interest in eating, but it isnt possible due to his nissen surgery being too tight. New hurdle to overcome..